Ovarian Cancer Toolkit

Ovarian cancer begins in the ovaries. Ovaries are reproductive glands found only in women. The ovaries are made up of three main kinds of cells. Each type of cell can develop into a different type of tumor. Most of these tumors are benign (non-cancerous) and never spread beyond the ovary. Malignant (cancerous) or low malignant potential ovarian tumors can spread (metastasize) to other parts of the body and can be fatal. Ovarian cancer is the fifth leading cause of cancer death among women in Indiana. In Indiana, during 2014, there were 419 new cases of ovarian cancer diagnosed, and 313 ovarian cancer related deaths. Ovarian cancer causes more deaths than any other cancer of the female reproductive system.1

Who gets Ovarian Cancer Most Often?

The most important risk factor for ovarian cancer is a strong family history of breast or ovarian cancer. Women who have had breast cancer, or who have tested positive for inherited mutations in BRCA1 or BRCA2 genes are at increased risk. Studies indicate that preventive surgery to remove the ovaries and fallopian tubes in these women can decrease the risk of ovarian cancer.1

Some additional risk factors include:

Age. Ovarian cancer is rare in women younger than 40. Most ovarian cancers develop after menopause. In Indiana, during 2010-2014, 61 percent of all ovarian cancers were found in women 60 years of age or older.

Smoking. Tobacco smoking increases risk of mucinous ovarian cancer (cancer that begins in the outer lining of the ovary). Visit www.QuitNowIndiana.com for information, resources and assistance with smoking cessation.

Other medical conditions. Other conditions, such as pelvic inflammatory disease and a genetic condition called hereditary nonpolyposis colorectal cancer (also called Lynch syndrome), may indicate an increased risk for ovarian cancer.

History of hormone replacement therapy (HRT). Studies have shown that the use of menopausal hormone therapy (estrogen alone and estrogen combined with progesterone) can increase risk for developing ovarian cancer.

Obesity. Heavier body weight may also be associated with increased risk. Overall, it seems that obese women (those with a body mass index of at least 30) have a higher risk of developing ovarian cancer.

Reproductive history. Women who have been pregnant and carried to term before age 26 have a lower risk of ovarian cancer than women who have not. The risk decreases with each full-term pregnancy. Women who have their first full-term pregnancy after age 35 or who never carried a pregnancy to term have a higher risk of ovarian cancer. Breastfeeding may lower the risk even further.

Common Signs and Symptoms of Ovarian Cancer

Early stages of ovarian cancer usually have no obvious symptoms. Some women may experience persistent, nonspecific symptoms including bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly, or urinary urgency or frequency. The American Cancer Society (ACS) suggests that women who experience these types of symptoms on a regular basis (for example, daily) for more than a few weeks should consult with their healthcare provider. The most common sign of ovarian cancer is swelling of the abdomen caused by an accumulation of fluid.

Early Detection

In Indiana, 17.6 percent of ovarian cancers are found at an early stage. When ovarian cancer is found early at an in situ stage (meaning the cancer is at the earliest stage) or the localized stage (meaning the cancer has not spread), about 92 percent of patients live longer than five years after diagnosis. Currently, there is no accurate test for early detection. Often, ovarian cancer detected during a routine pelvic examination is at an advanced stage (either the regional or distant stage, meaning the tumor has spread to other parts of the body). For women at high risk of ovarian cancer, or women with symptoms, a pelvic examination in combination with a transvaginal ultrasound may be used. A blood test for the tumor marker CA125 may be offered, though this strategy has not yet been proven effective in reducing ovarian cancer mortality.

Survivorship

Due to advances in treatment and earlier screenings, more and more people are living after a cancer diagnosis. The ACS defines a cancer survivor as any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life. According to the Indiana State Cancer Registry, as of December 31, 2014, there were an estimated 300,626 cancer survivors for all cancers combined; the four highest-burden cancers in the state (breast, colorectal, lung and prostate) account for approximately 54 percent of these survivors. Survivorship, like cancer itself, is complex and can be difficult to navigate.

According to the Indiana Cancer Facts and Figures 2015 report, there are three phases of cancer survival – the time from diagnosis to the end of initial treatment, the transition from treatment to extended survival, and long-term survival. More often than not, the terms “survivor” and “survivorship” are associated with the transitional period after treatment ends; however, survivorship includes a wide range of cancer experiences and paths2, including:

Living cancer-free for the remainder of life;

Living cancer-free for many years, but experiencing one or more serious, late complications of treatment;

Living cancer-free for many years, but dying after a late recurrence;

Living cancer-free after the first cancer is treated, but developing a second cancer;

Living with intermittent periods of active disease requiring treatment; and

Living with cancer continuously without a disease-free period.

The preferred path for most cancer patients is to receive treatment and be “cured.” This is the primary goal of all cancer treatment, when possible. For many cancer patients, the initial course of treatment is successful and the cancer does not return.

Many cancer survivors must still cope with the mid- and long-term effects of treatment, as well as any psychological effects – such as fear of returning disease. It is important that cancer patients, caregivers, and survivors have the information and support needed to help minimize these effects and improve quality of life and treatment.

According to the ACS, the overall five-year survival rate for ovarian cancer patients is 46 percent. The 10-year survival rate is lower at 35 percent. However, the survival rate varies substantially by age; women younger than 65 are twice as likely to survive five years when compared to women ages 65 and older. According to the ACS, only 15 percent of cases are diagnosed early (at a localized stage), which has a five-year survival rate of 92 percent. In Indiana, during 2014, approximately 17.6 percent of ovarian cancer cases were diagnosed early.

Ovarian cancer treatment usually includes surgery and chemotherapy. Surgery usually involves removal of both ovaries and fallopian tubes, the uterus, and the fatty tissue attached to some of the organs in the belly (called the omentum). In addition, a biopsy of the lining of the abdominal cavity (called the peritoneum) is also conducted.

In 2006, the Institute of Medicine (IOM) issued a report titled From Cancer Patient to Cancer Survivor: Lost in Transition. The report recommends that every cancer patient receives an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. In response to the IOM recommendation, many groups have now developed various types of “care plans” to help improve the quality of care of survivors as they move beyond their cancer treatment.

A treatment summary is critical for cancer survivors. The summary should describe the cancer diagnosis and medical treatments that were received (or that may be needed moving forward). Not only does the treatment summary provide survivors with a record of cancer treatments, but it helps survivors talk with other health care providers who may not have been part of the cancer care team.

According to the ACS, in addition to a treatment summary, a survivorship care plan should include a description of what follow-up appointments and tests will be needed and when they will be needed, a description of preventive measures that can be taken to help stay well, a description of any possible side effects from cancer treatments and ways to manage those side effects, and a description of ways to manage physical and mental health.

Sample Social Media Messages — These sample messages can be customized, or used as they are to promote awareness, prevention, and early detection.

Indiana Cancer Control Plan (ICCP) 2010-2014 — Provides a roadmap for cancer control in Indiana. The ICCP includes six focus areas: primary prevention, early detection, treatment, quality of life, data, and advocacy. This can be linked to documents, websites, presentations, or through social media.